Discussion in 'Other treatments' started by Binkie4, Feb 8, 2018.
What the ME Specialists Say
Dr. Teitelbaum has written “Using the blood thinner heparin has been able to help half of those who failed all other treatments.” He continues writing that “I find that about half of my patients with the most severe and refractory symptoms of CFS/FMS get better with this treatment.” Dr. Teitelbaum has found that almost every CFS patient he has tested to be positive for hypercoagulation. He does however stipulate that he hasn’t tested healthy controls to compare his results. Dr. Teitelbaum also warns about the dangers of heparin treatment and warns that it is a riskier drug than most of the other drugs he recommends. He tends to use it as a last resort. Dr. Teitelbam is also not 100% convinced in the hypercoagulation hypothesis. He speculates that another feature of heparin may be responsible for the positive effects on CFS patients such as its antiviral properties.
Dr. Cheney mentions heparin in a talk given in the year 2000. He speaks of its ability to shift the immune system from Th2 dominant to Th1. This may potentially benefit ME patients with a Th2 shifted immune system. Dr. Cheney only recommends heparin if the patient tests positive to hypercoagulation. He has found approximately 50% of his patients testing positive.
Dr. Myhill is not an advocate of heparin in ME patients. She has trialled heparin usage in 4 of her patients with no success. She cites the aforementioned negative Kennedy et al. study as evidence against hypercoagulation being a factor in ME."
There are a number of clotting disorders which would not appear in normal blood tests. A thrombophilia screen would be necessary.
One clotting disorder, but there are others, is factor v Leiden which I have, and which affects about 5% of the Caucasian population.
I had not read of a link with ME before reading the above article, part of which @Sly Saint has posted above.
I had the ISAC panel done through HEMEX labs many years ago and I am not in a hypercoagulative state.
One marker indicated an 'underlying inactive infection'.
Not familiar with Hemex / ISAC but was that marker increased Thrombocytes?
I started having that in the years leading up to illness. Doc did not think much of it.
It wil be interesting what they will find out about the sticky blood issues that are mentioned often in ME lately.
Based on my experience of a brief period of sticky blood at my OI onset I think the sticky blood/high haemoglobin problems that many of us get are a reaction to the low blood volume or OI problems. It's the body's initial response to a drop in available oxygen, but it doesn't last or we'd be recalled after every FBC test.
I suspect that blood thinners make us feel better because they increase blood volume.
I took Dalteparin/Fragmin for 6weeks when I was non weight bearing on both legs last year, my head fog did clear, but that might have been due to the enforced resting.
@Mattie I've sifted through all my labs etc to find my report.
My Prothrombin Fragment 1+2 was HIGH (1.2), but not overly- ref range 0.4-1.1
Platelet Activation by Flow CD62P was HIGH David Berg (lab owner at HEMEX at the time) told my doctor when he went down to Arizona that it was an indication I had an 'underlying infection' and that by taking Heparin it would 'thin' the blood and reactivate the infection. I was to take heparin with anti-virals. We discussed this with the Head Hematologist here but she disagreed. So I basically did nothing.
I'm not sure about Thrombocytes. Is this the same as Thromblin/AntiThromblin Complexes? This was normal.
Not sure. My GP called it very mild reactive thrombocytosis and said it was pretty common tot have that slight elevation. No need for further investigation he said.
Could oxidative stress that triggers hemoglobin production combined with the lower blood volumes (Bell - Streeten) be a biological adaption as the body moves towards using anaerobic energy production.
Thrombocytes are platelets. These are the small blood cells that clump together to form a clot.
Platelet count is one element of the standard full blood count. Slight elevations are common and are unlikely to mean much. The article linked by @Mattie explains the significance of more serious elevation of platelet numbers.
Thrombin/Antithrombin complex increases during the clotting process so elevation indicates the presence of coagulation.
That's interesting @Mij. I have never heard or read that taking heparin could/ would reactivate the virus. It interests me because I took heparin for 6 weeks in March/April 2007 after hip surgery and was diagnosed with ME early in 2008. ( I had severe EBV in 1986 but mostly recovered). Basically I never returned to normal after surgery but I never linked it to heparin, nor has anyone suggested there is a link. I still take it in 2 day doses when I fly long haul but if there is a reactivation link, I imagine that's too short a time spell to activate it.
(I will look out my blood results where I was diagnosed with factor v Leiden in about 1999 later.)
@Liv aka Mrs Sowester - you obviously found benefit from taking an anticoagulant last year so this is very confusing. Just to add that, as far as I know but I may be wrong, you don't get short periods of sticky blood if by that you mean a genetic coagulation disorder. I think it's genetic and lifelong. I have heterozygous factor v Leiden, i.e. Inherited from one parent. Homozygous factor v is inherited from both and is more likely to lead to blood clots. There are other disorders.
But there is Dr Davis' sticky blood which doesn't flow......I think we're missing a lot of information about this sticky blood.
And low blood volume. I thought I had found a place to have it measured reliably in UK but the person ( in the other place) trying it had a faulty result. Anyone else know where it can be measured? Interesting.
You might be interested in reading this:
Just found this on the RCCX site. Views are that heparin helps ME/ CFS. @Liv aka Mrs Sowester , and @Mij .
EDIT: article refers to acquired or congenital coagulation disorder, acquired being caused by infection or something similar @Liv aka Mrs Sowester
EDIT: will definitely talk to ME Consultant
@Binkie4 . . . yes, this is the protocol that was recommended by Berg years ago. I took Transfer Factor and it re-activated both HHV6 and EBV. I had a terrible relapse and thought I was dying. My doctor mentioned this to Berg and he told him I should have been taking Heparin at the same time.
Obviously great care is needed. Absolutely no one has suggested that my coagulation status may have something to do with ME. I need to read the articles carefully. I think I saw somewhere that 75% of pwme ( need to check this) had an acquired or genetic coag issue. I had heavy antibiotics and low mol weight heparin around hip surgery. Sorry you were made so ill.
@Binkie4 . . . if I recall correctly, Ken Lassessen and family had a genetic predisposition and heparin was not recommended in this case.
Any link? -no rush
@Binkie4 . . . it was so long ago and I can't find It. I remember Ken saying he used enzymes to break down fibrin and that LMW heparin was not recommended for hereditary factors.
EDIT: Well he says he took heparin here, but I recall something different years ago.
Hi @Binkie4 my understanding is that sticky blood can be caused by several factors, it isn't always lifelong or due to coagulation issues.
It can be a temporary response to low oxygen availability due to 'lifestyle factors' such as heavy smoking or an adaptation to environment like very high altitude. My mother and I have both had high haemoglobin counts after viruses which returned to normal within 3 weeks (separate times, separate viruses, we live at different ends of the UK.)
My high haemoglobin sticky blood coincided which the onset of my orthostatic intolerance in 2010.
My 6 weeks on blood thinners was last year.
I've had many FBCs over the years and my haemoglobin count was only raised once.
I've had many occasions where I've been a bit dehydrated and taking blood has been difficult, but this has never affected my haemoglobin count.
I can't say for certain my head fog clearing was due to the 6 weeks I spent on Fragmin because I was totally unable to stand at the time and the enforced rest and OI avoidance may well have cleared my head. It could have been due to one factor, the other or a combination of both.
I broke one ankle and damaged the ligaments in the other. They wanted to put pins in my spiral fracture so I could bear weight on the cast, but I react to everything, metals, stitches and iodine all cause me MCAS problems. I agreed to 6weeks total non weight bearing to avoid an op and this made me a clotting risk.
Before the accident I wasn't pacing well, too much walking till I was dizzy, standing and doing stuff, just pushing it really.
I've recently started monitoring my heartrate and checking my blood oxygen saturation with a finger tip oximeter, my oxygen levels are very rarely normal they are almost always low. So I guess my sticky blood didn't resolve due to my oxygen saturation returning to normal.
(Also the fragmin did affect my liver function, which seems to happen with MS patients sometimes too. It resolved when I stopped the injections).
I had a trial of Heparin once over 3 months (twice) with injections once a week and a break in-between. It wasn't for anything ME related.
Sadly it didn't improve any of my ME or POTS symptoms. I didn't get any better physical functioning i.e. couldn't stand or walk further. Post-exertion symptoms were the same.
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